The Amateurs

Caplan jokes that he is frequently (albeit erroneously) “accused of being the founder of the field,” but while bioethics may have existed before him, there wasn’t much evidence of it at the University when he arrived in 1994. “There wasn’t any bioethics program, or center, or anything,” he recalls.

Given the prominence of medical research at Penn, and the growing dominance of health care and pharmaceutical enterprises in Philadelphia’s regional economy, it made sense for the University to develop a bioethics backbone. That became particularly clear in 1999, when a clinical trial for gene therapy at Penn resulted in the death of an 18-year-old named Jesse Gelsinger. An investigation by the Food and Drug Administration concluded that the scientists conducting the trial had fallen short in their informed-consent process, and failed to notify the agency or stop the study when two other patients suffered toxic reactions to the therapeutic agent [“Gazetteer,” Mar|Apr 2000]. Gelsinger’s family sued the University for wrongful death, assault, battery, lack of informed consent, and fraud. The parties reached an out-of-court settlement in November 2000.

“I hate to put it this way,” Caplan says now, “but scandal is often bioethics’ best friend.” In the fallout of the Gelsinger case, he remembers, “there was a commitment to fix oversight of research. Well, it dragged bioethics along.”

Penn’s trustees approved a cross-disciplinary master’s of bioethics program (MBE) in 1997. It was designed to be a supplementary degree, serving students enrolled in other graduate programs—primarily medicine and law—as well as mid-career professionals like health-care providers and administrators.

“We didn’t intend you to become an academic bioethicist,” Caplan explains. “We were always saying: We’re going to train the next generation of doctors who are interested in bioethics, or lawyers who are interested—or Indian chiefs who are interested, whatever they are.”

This was a natural approach given the state of the field at the time.

“When bioethics began, it was an amateur’s delight,” Caplan recalls, referring roughly to the 1970s and ‘80s. “You could come from any field,” he explains. “There was no notion of a discipline. There was no notion of a profession. And to talk academic-ese, there wasn’t a canon.”

The field had matured enough by the 1990s that a handful of people could make a full-time career out of it. But Penn’s aim was basically to bring more amateurs into the fold. That’s what it has done over the past 15 years, and to a far greater degree than comparable programs at other universities.

“We get 50 or 60 new students a year. The next largest program probably takes in 20 to 25,” says Autumn Fiester Gr’02, who currently directs the master’s program. “And students also take our courses as electives,” she adds. “So we do about 650 enrollments a year—far more than the number of people matriculated into the program.”

One measure of the MBE program’s success is its alumni. Among them are directors of state and national bioethics commissions, chairs of medical departments and academic programs, general counsels of major hospitals, and a vice president for policy at Johnson & Johnson. [See sidebar.]

Over the MBE program’s lifespan, bioethics as a discipline has come into its own in ways its progenitors probably never imagined it would. Even Caplan, who played a seminal role in bringing bioethical debate out of the ivory tower (first through a syndicated column and nowadays as every beat reporter’s go-to source for an eminently quotable expert opinion), has been surprised.

“I thought it might turn into something that people would chat about and kick around the water cooler, and kind of maybe take into their Kiwanis Club or talk about at the church supper,” he says. “I’ve been amazed, personally, [that bioethics has gone] from this sort of amateur-hour field that I came into as a graduate student, all the way out to seeing people like Bill Frist talk about Terri Schiavo in Congress and lose his presidential ambition over a bioethical biopolitics issue. I’ve been amazed to see George Bush sit in the Rose Garden before 9/11 and give his first speech on embryonic stem cell research, as his kickoff. Pretty impressive. I have been amazed to be asked to chair this United Nations taskforce on organ trafficking—an ethicist would get to be the chair! … And it’s been interesting to see Zeke have such a role, as an ethics person, in the health-reform effort.”

A few things happened to transform bioethics from water-cooler chitchat into what Caplan calls “a real discipline that has established methods and techniques.” The most crucial, in his estimation, was a shift away from the overtly religious language that characterized bioethical discussion in its early days, when people like Catholic moral theologian Richard McCormick, and Christian ethicists Paul Ramsey and James Gustafson, numbered among its most outspoken contributors.

“There was a critical moment at which bioethics almost didn’t make it past its early, amateur, sort of carnival days, because if you speak explicitly in religious terms you tune out people who don’t buy into your religious perspective,” Caplan says. “The philosophers arrived and said, ‘We can secularize that language.’ This is not secularism—it’s a secularization of the ways to talk. That’s when I showed up, just as part of that shift. And religious voices got tamped down. They didn’t disappear. There are plenty of them. But bioethics managed to evolve a discourse that let it talk without privileging any book, authority, divine being, or outlook. That was crucial to its success. It has now become the way the culture talks about its most important problems … We don’t have a lot of ways to get past American pluralism, but bioethics is a common-ground area.”
 


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